1. “The most important thing you have to do is to keep having sex with your boyfriend so that he doesn’t leave you.”
2. “Is it that your bed is more comfortable?” — A neurologist after patient told him that I was mostly bed-bound.
3. If you only had children, you’d find your “get up and go”
4. (To thirteen year-old) - Your excruciating pain is probably caused by your bra strap.
5. What you really need is rest and exercise
6. If you just did the right form of yoga…
7. Your illness is a psychosomatic manifestation which mirrors the symptoms of your father’s brain cancer (from which he died 9 years previously).
(and counting – submit yours here)
As I sit here typing, I am experiencing quite a bit of my heart arrythmia. It’s usually a pretty good sign that I am not doing too great, and have probably been over doing it in general. Will that stop me writing? No. Why? Because I’m and idiot.
It is that kind of idiotic stubbornness that got me where I am today. Refusing to acknowledge that I was getting sicker and sicker, I continued life as normal. Digging a bigger and bigger hole for myself. And now I will never be able to climb back out.
I actually said the words ‘I am sick of being sick, so I am just going to ignore it’. Yes. That. Stupid. In my defence, I had always recovered from illness before, so had every right to assume that I would this time too. Of course, I didn’t.
So, as far as I am concerned, the number one message we need to get out there is. Stop! If you have ME or CFS, don’t continue! Even if a smug looking doctor tells you too. Guess what? You actually do know better than them this time. If they tell you to exercise, the only running you should do is AWAY FROM THEM! The number one rule is REST.
Then your hole might not get so deep. You might actually be able to climb out of it one day. Send me a postcard when you do.
Out of Sight Out of Mind….My friend is a prisoner in his own body.
I created this picture to symbolize that even though we suffer in pain (this is demonstrated through the flame in the eye) we look to the future (the eye looking forwards) , i have then at the bottom written ‘the eye of a fighter’ and included a blue ribbon (the colour associated with M.E and a bird to relate to canary in a coal mine.
-How do you feel misunderstood?
- Since being diagnosed in June 2013 i have had so many people around me create there own definitions of M.E. This is when i started hearing ‘your just tired’ ‘walk it off’ ‘get to bed earlier’ when in actual fact i was in agony and went to bed at 8pm everyday as i couldn’t bare to stay awake any longer. This made me feel the loneliest i have ever felt- i lost all my friends due to not understanding the illness.
Every time i tried to explain to them what it was, i got a snappy comment back telling me it was a sob story or what not. I can now quite proudly say i am no longer friends with these people, and have a group of friends much more understanding. But that does not stop comments i get from people, telling me im not sick because i dont look it- i dont think they relise how much it hurts when they say that.
I think the illness is misunderstood, and is not known widely enough throughout the world. When i heard about Canary in a coal mine i was ecstatic to know someone had finally decided enough was enough and is trying to share their story, and how the illness effect people throughout the world. Thankyou.
My boyfriend, who has a recognized medical condition, said “There’s a difference between [my condition] which really breaks down the body and [yours,] feeling a little crummy.”
I had an ex say “I don’t believe in fatigue.” When I first got Lyme and could barely leave my house that same ex said he didn’t see the point of walking all the way to my house to hang out there, just because “I had a little headache.” At the time I was too tired to prepare food for myself and had to buy everything pre made since I didn’t have strength to cut food with a knife.
Most people throughout the whole thing seem to think I’m within striking distance of getting over it all tomorrow if I just “wanted” to.
My boyfriend thought I might just want to be sick or be attached to it and asked me, “If you could push a button and be totally better tomorrow, would you do it?” I said, of course, I’d push the button and be better. I find this question highly offensive. Would you push a button to get over [your recognized medical condition?]. What kind of a question is that?
After one year of being sick after a bad case of mono an older male infectious disease specialist told me(a younger female patient), “The most important thing you have to do is to keep having sex with your boyfriend so that he doesn’t leave you.”
For seven years, I watched doctors from University of Chicago, Mayo Clinic and other educated professionals examine my wife whose health continued to fail as they misdiagnosed one disease after another - chronic fatigue, fibromyalgia and even mental illness. It was not until we discovered she had Lyme Disease and found a specialist who could diagnose and treat Lyme Disease that we were able to begin the slow but steady process of repairing the physical damage caused by Lyme Disease. Lyme is regularly misdiagnosed as over 300 diseases, but in fact the diseases are a symptom of Lyme, which is utlimately the cause of the illness being diagnosed. You won’t get better until you begin treating the Lyme and other co-infections. You must find a Lyme Literate Doctor to even find someone with the knowledge to run the proper test to diagnose Lyme. I encourage Jennifer Brea to please not accept your diagnosis of Chronic Fatigue until you have ruled out Lyme. I have been on your journey with my wife and know how much these misdiagnosis’ can cost you in terms of your health.
My Doctor, although seemingly sympathetic and had started to run the usual blood tests to eliminate other causes for my symptoms, took me by surprise by saying ” You probably just need a good nights sleep” Oh my, If only I could get a good nights sleep! We need to raise Doctors awareness of this disease.